Amelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.

Wednesday, 8 June 2011

The Conference in Brisbane

HOPE is an excellent thing to have if you try to believe there has to be some out there in our big wide world.
But when you spend a day listening to doctor's and scientists explain the "evidence" of hope then you enter a whole new world.

Yesterday we listened to many people, employed by Brashat, speak about what they have discovered and what they are getting closer to.........treatment for A-T and eventually a cure.

We began the day listening to Krissy Roebig speak about "her story".
I admit, I cried.
We heard the background of Brashat and the A-T clinic.
She has two children with A-T and four years ago decided she could not just sit back and wait for everyone else. She needed to be proactive and establish a base for A-T here, in Australia.
Krissy has not only set up an organisation, she has employed world renowned scientists, who have approached many other medical groups asking them to assist in finding answers. Brashat has established a database for all A-T children and has three clinics per year with highly qualified specialists.
Next week is the Brisbane Gala Dinner.
700 tickets sold in 48 hours.

Our day was spent listening to what A-T does to children.
We listened to what Amelia's future will be.
But we also listened to what WE can do to help our daughter.

Apparently there is research to prove that nutrition can really help.
In the future there may be a clinical trial involving "nutrition shakes" which may assist in slowing the progression of A-T.

Then there was a speaker I cannot remember.
I fell asleep.
I think he thought we were trying to gain our medical degree's in molecules, genetics, cells and god knows what else.
The point here is, he knew what he was talking about and was very enthusiastic.
So another person researching......something !!!

Next was a lady speaking about the immune system and A-T.
If an A-T child gets a cough, their lungs will be permanently scarred. They cannot heal.
This speaker gave us advice on making sure we avoid all sick people and how to look after our family's health.

Next was the speaker we flew to Brisbane to hear. Well at least the content of her talk was exciting and gave us the most hope of any of the other talks.
Dr Kate Sinclair (neurologist in Queensland Health) gave me so much insight into the research in language I understood at the March clinic and she did it again yesterday.

Kate spoke of the world-wide clinical trials website and the A-T registry set up in Italy.
She spoke of the possibilty of a bone marrow transplant being a lifeline to A-T patients in the future.
Kate mentioned Amantadine medication being used to help stiffness, lack of facial expression, slow movements, ataxia and involuntary movements.
Betamethasone medication possibly improving the neurological effects of A-T and Baclofen medication reducing spasticity and tremors.
(One of these medications will be used in a trial on all of our kids in the next 12 months-just cannot remember which one !!!).
Brain Imaging would be used frequently with any possible treatment to track a possible reduction in the loss of brain cells.
And finally she mention Deep Brain Stimulation (DBS). I will speak of this more later.
The excitement of Scott, Myff (yes Amelia's beautiful physio flew all the way up to listen) and I were overjoyed with her talk.
She was excited. Talking so that we understood and mentioned frquently the HUGE steps being made.
(After a talk later she said we may see real results in 5 years!!).

I was once again falling asleep when the stem cell man spoke BUT I did write down "stem cell research will lead to transplanting healthy cells - created from Amelia's skin - into her body OR using the research to create drugs to treat A-T. They can reprogram her cells and make them healthy !!!!

Finally I really enjoyed Greg's talk. He was also at the clinic in March, is a big kid, looks like he has ADHD and is very clever.
Two weeks ago he began in a new job. He will be working with people that are genius's in neurophysiology of neural activity. They are establishing a world class centre here in Australia that will focus on Deep Brain Stimulation. They already have patients, with dystonia and parkinsons, that have improved immensly. Greg showed us footage of children in wheelchairs having this "pacemaker type device" inserted into their brain that constantly reprograms the brain to function normally.
HUGE.
After talking to him later, A-T kids will definately be involved in testing in the future.
He believes we have been looking at sultana's instead of grapes in the search for treatment or a cure.

But of course it all comes back to funding.
Like everything else.
The research cannot be done faster without money to pay for more manpower.
Every speaker thanked Brashat for helping fund their discoveries.
Brashat needs my help.
If I want Amelia to be saved, at whatever stage she is at, they need to find treatment and/or a cure quickly.
I am not going to lose her because there is not enough money to take the steps these doctor's know can be taken.

Scott has come home a different person.
I made him come to Brisbane.
He has come home with real hope. Real evidence that it may happen.

On August 13th 2011 a magnificent gala night is happening in Melbourne for Brashat.
There will be speakers telling you of the hope I have been so lucky to hear about on two occasions.
I will be working hard now to get donations and sell tickets because..........
they may REALLY just save Amelia's life.

Amelia's Project Links

About Me

Amelia is a beautiful eight year old who has recently been diagnosed with Ataxia Telangiectasia. Amelia's Project began on Facebook after Amelia was diagnosed in December 2010. My name is Amanda and I am Amelia's mum. Down this side of the page you will see "blog archives". This covers our journey from the start of Amelia's A-T diagnosis. I would like to share our journey.
Please email us at ameliasproject@yahoo.com.au